Wednesday, February 1, 2012

Media reports about changes to the definition of autism have led to fears that some children would no longer meet criteria to get services.

An expert panel of the American Psychiatric Association is proposing a change as it prepares the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM) – the first major revision in 17 years.

I interviewed Dr. Jessica Brian, a clinician-investigator in the Autism Research Centre at Holland Bloorview, to learn more.

BLOOM: What are the proposed changes?

Dr. Jessica Brian: The proposed changes are to have a single term – autism spectrum disorder (ASD) – that includes children who would previously have fallen into one of three categories: autism, pervasive developmental disorder – not otherwise specified (PDD-NOS), or Asperger syndrome. They’re also talking about collapsing the idea of social deficits and communication deficits, since there are so many overlaps between the two. There will not be a single category for social deficits and a single category for communication deficits but one category called social communication. In that category you have to meet criteria on all of the items but the items are extremely broad and inclusive.

BLOOM: Are there advantages to the old system of three definitions?

Dr. Jessica Brian: Not really. Currently there isn’t evidence to support this distinction between three sub-categories. Most of the research out there doesn’t find differences in terms of genetic susceptibility – so the three sub-categories seem to have the same genetic basis. That’s why you’ll find a family where one child has Asperger’s and one child has autism. And prediction of outcome isn’t supported by the three distinctions. When we follow kids in research we find they typically stay within the spectrum, but they move up or down in terms of whether they meet the full criteria for autism or the fewer criteria for PDD-NOS. We don’t think of them as separate disorders, but as different intensities across a continuum. In my clinical work, the distinctions between the sub-categories can also be confusing for families.

BLOOM: I’m surprised, because I thought diagnosing a child with autism was more precise?

Dr. Jessica Brian: If you have a room full of autism experts seeing one child, they will usually agree that the child fits somewhere on the autism spectrum but there will not be good agreement about which sub-category. It is challenging to identify exactly where a child sits on the autism spectrum and that’s what’s prompted these recommendations.

BLOOM: Are there any other advantages to having one definition?

Dr. Jessica Brian: We think one definition could expedite the assessment process, because we won’t fuss about whether the child has PDD or autism, we just know they have ASD and we can move them into services more quickly.

BLOOM: I know there’s been concern by parents that higher-functioning children will no longer qualify for services.

Dr. Jessica Brian: In Canada it’s extremely unlikely that kids with existing diagnoses would ever be re-diagnosed unless parents specifically want it and seek private assessments. There aren’t the resources in the public system to re-diagnose these kids. So the fear of losing services is unwarranted, at least in Canada. I know people in the U.S. are worried about losing insured services but I have to ask the same question: Who is going to reassess all of these kids?

BLOOM: What about findings that are reported to show that only 45 percent of the highest-functioning kids would qualify for the new diagnosis?

Dr. Jessica Brian: That’s just one piece of preliminary evidence that hasn’t been published yet. A study published in January found that 12 percent of higher-functioning individuals might be missed by the new criteria, but if only one criterion was removed, almost all kids would be included. It’s important to note that we have to find ways to provide necessary services to kids who have needs even if they don’t meet full criteria for a diagnosis. Some kids will still need communication or social or behavioural supports even if they don’t get a diagnosis of ASD. We need to keep this in mind and keep pushing for needs-based access to services.

BLOOM: Is the broader definition positive in that children aren’t as pigeon-holed when they’re first diagnosed?

Dr. Jessica Brian: Yes, we can say that they will most likely stay on the autism spectrum, but developmental changes are very possible.

BLOOM: I guess there will be some resistance to the broader definition?

Dr. Jessica Brian: According to the proposed changes, the term Asperger won’t be used in the DSM. But I suspect there will be a strong group of people with Asperger’s who self-identify that way and I would expect that that term will remain alive among individuals who have those characteristics. There is a culture of Asperger’s that we won’t lose anytime soon. It’s a badge of honour, a characteristic many people are proud of.

BLOOM: It doesn’t sound like the change in definition will have a significant impact on our work here?

Dr. Jessica Brian: We’ve been using the term ASD for many years even though it’s not in the DSM4. And the reason we’ve been using it in research and clinical settings is because we’re aware that those sub-distinctions aren’t always that helpful or meaningful.

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